Struggle!

What a challenge! I am really trying to maintain a positive attitude as I wandered down this bizarre rabbit hole of trying to one fix my broken chair and in 2 begin the process of acquiring a brand-new manual wheelchair that will fit me and be a joy to use. Thank goodness D D has led the battle on both fronts: chair repair and new chair acquisition. I am always amazed how people get trapped in minutia on a simple request. I just want my broken manual wheelchair repaired, as quickly as possible. I would be double pleased if the chair honors its warranty and replace the part at no charge but what's important to me right now is to have that piece of equipment fixed as quickly as possible. I just called National Seating and Mobility to see how the progress of the chair repair was going and of course silly Sarah seems to delight in letting me know she is the gatekeeper of knowledge regarding my chair. Essentially nothing is being done and tell a decision by Sunrise Medical renders a decision of whether or not to honor the warranty they've already indicated they would. In the meantime I am having to hobble around in a solid frame para-chair. Again, thanks to my beautiful wife, we have made the chair a bit more usable by raising the front end by one notch while lowering front-end making transfers a bit easier both to be onto and off of the commode and out of bed in the mornings. Of course by raising the foot pedal I change my whole reality just a little and that little makes all the difference. I was noticing this morning while trying to get dressed how difficult this one adjustment made in the “ standing” to pull my pants up. I was able to achieve the task but was more difficult. We had to raise the foot bar because the flooring the front and of the wheelchair made me gouge the floors and made even the smallest transition from one level to the next a major challenge. So now the floors are safe and I'm under my own power once again.

Of interest to note when D D dropped off my broken chair they send with her a solid frame, 18 inch wide, chair for me to use. When I saw this yesterday afternoon after work I was hopeful but alas when transferring into the chair I found chair totally usable for my needs. Once again, I was using, the huge solid frame I got from Create a couple years ago. We call this chair the green chair even though the chairs rickety and somewhat difficult to use, the chair is usable as gets me by. Today is Tuesday I wonder how much longer I shall have to wait. Tomorrow I am scheduled to meet with my rehab team who will fashion a letter for my MD to sign which will, hopefully push my insurance provider to allow me a new manual wheelchair. It should not be this difficult.

Thursday night I had just finished watching Grays Anatomy and and was taking in the 9:00 news when the wheelchair I was sitting in essentially imploded. I was sitting in a Quickie 2, a manual wheelchair which collapses for convenient storage. The Quickie 2 has been a wheelchair standard for people with disabilities for more than two decades. The chair is heavy duty yet lightweight and this particular chair I had more than 14 years so I guess I've got my investment out of the device.Still I felt it was just plain rude for the chair to fold the with be in it. It was weird I got the sensation of being squeezed by my chair. I couldn't figure out what was happening. When I tried to roll I found it most difficult my hips were in the spokes, literally. Dianne was sitting behind me on the sofa and could not see my chair self-destruct. It was only after I heard something dragging on chair and had Dianne look under my chair informed me that one of the crossmembers of the chair had broke and was hanging down and we had better do something quick or soon I would be dragging my ass on the floor!

Understand that my manual wheelchair is an intricate part of my life. I rely on this technology to get around inside the house specifically the manual wheelchair allows me to get close enough to the commode to transfer on and off. I also use the chair to get under the sinks of my house as well as close enough to my bed transfer on and off. And I must confess, embarrassingly so, that I really don't have a backup system. It was all Dianne`to get the in the bathroom and on the commode. Two or three years ago I purchased a piece of used equipment from a State program which refurbishes assistive technology particularly wheelchairs I got a solid frame, manual chair, but never really used it because the axles, release axles, which came with a chair were too small to deploy successfully so what we'll was always at risk of coming off whenever I pushed the chair. It was just too much bother to get the chair should—major mistake. But Dianne jumped right in found the chair in the garage, drug the chair in the house and fixed the problem by finding a quick release axle which would secure the wheel to the chair. Even though the chair worked there is still a host of challenges. The biggest challenge being the width of the solid frame. There is a very narrow path between the wall and our bed and the solid frame chair was just not wide enough. I eventually had to jump out of my chair at the bottom of the bed and drag my butt out to the top. It had taken nearly 2 1/2 hours to achieve this desperate solution.

Needless to say we spent the day Friday trying to find a solution to our problem. We thought for sure it would be no problem to find an acceptable wheelchair at one of the DM providers in town. We found one provider who actually indicated they had a 18 inch wide manual wheelchair. Of course when we got to the vendor it was indeed a 18 inch wide manual wheelchair, but it was a real “ dog” . We ended up getting a manual chair from the local I L C (Independent Living Center). I knew this chair would be a challenge at best but I was desperate. We threw the dog chair in the back of a van and at home. There was cold, snowy and depressing.

I grew even more impressed at the end of the day, transferred him to the chair and found it almost impossible to one, to stay in the chair and 2, to push the wheelchair anywhere. Dianne was able to give me in bed this morning we drive solid frame downstairs and I have been using the solid frame sense. I also spent some part of the day on the Internet in various classified pages desperately looking for a used Quickie 2, and I may have found one or two chairs which might work.

I am so thankful Dianne was able to save my butt in the man eating chair and fix my solid frame to a usable status. But I should've had a viable backup system. I am smarter than that I should have a backup system that worked. I commit the change that one way or the other.

Night Terrors

Blog March 21, 2013

Something is going on I'm not sure what is, but whatever it is it is affecting my sleep. The last couple nights I've woken at three o'clock in the morning or earlier and not been able to really get back to sleep. Last night was really weird I woke up almost totally congested. I could barely breathe out my nose. I started drinking all the water I could from the container I keep it the head of the bed. This finally kicked him particularly after a drug myself up to a sitting position. I also noted I was feeling slightly terrified. Not screaming terrified just upset enough not to be of sleep. I read an hour then eventually got back to sleep for just a little bit. I guess I'm okay today functioning on his little sleep as I have had but I just hate waiting three hours of the night open for sleep.

Well I waited there waiting for sleep I came upon but I feel maybe the problem. I think I'm feeling stress at the lack of structure to my life now. I think my brain is beginning to see how wide open retirement might be or can be. I think this is what I am feeling the stress from causing my night terrors. I am really hoping that some of the ideas I've been having may fill up this void. I also think I am missing the daily contact with people. I hate to think I am that people dependent but who knows? So I've got lots to do develop my time.

One item that I am getting excited about is reentering the Wellness Program offered by the University of Utah rehabilitation center. This was the program, you might remember, that focused on physically tuning up my body. The Wellness Program is a less expensive alternative to physical therapy. The problem I had with the wellness program was bad the program is only offered in the later hours of the afternoon usually from three to about 7 PM. While I was working I just could not see myself physically working out after a full day of work. Now however that work is a thing of the past feel more open to the program even at its late hour. Still I would much rather have my program earlier in the day. But I'm willing to try the program at the stated time and see how I do. I'm really hoping the increased physical workout well decrease the amount of spasticity I have recently been experiencing.I'm currently in a holding pattern as I am having to have my medical provider send the various prescriptions and requests needed to enter this program. Then once that information has been sent I will have three visits which will be establishing baseline information and tolerances to physical activity. Of course all of which will be attached to my insurance. Oh well I've met my deductible for this year so use it well I can.

Another item of interest will be contacting the local senior center, Heritage Center and see about becoming active in their program and seeing what I might be able to do at that center. This will take some sneaking up on but it might be fun. And lastly I still want to produce some more interview programs similar to what I did with Access Utah Network. So, I feel if I can get some of these items up and functioning maybe I will be less terrified into night.

Senior Thoughts

Finally, the temperature really feels like spring, fairly clear skies just a little wind and promise of a warm day.Dianne had Asher duty today so I had Dianne drop me off at the Sprout market—local natural food type market. Last week I made a pretty good stirfry using some vegetables Dianne picked up a couple days earlier. We both enjoy fresh vegetables and cooking fresh and after last week's dinner we sort of made a commitment to start eating better I. E. More Asian cooking. Asian cooking is not a problem for me I enjoy the process meal prep and the results and hopefully the meal is just better for us. So today I picked up fresh vegetables and nuts to use in making stirfry for tonight. I contemplated taking the bus back to my stop but the day being so nice I decided I would motor on home and window shop along the way.

The Murray heritage center is the local senior center and just happens to be on the way back sprouts market so I decided what the heck today I will check it out. Now I've been in the center before that was for work related reasons—I think I did a couple information fairs there. But I never got in the center as a senior so I figured why not see what it's all about. This was weird. I was surprised to see how busy the place was. I've noticed a number of vehicles in the parking lot and figured that since it was around 12 o'clock they would be serving lunch. They were serving or just finished in the place was crowded with doing daresay seniors. Real seniors kind that I figured would be there was just shock to see so many white haired folks in spandex,knit pants and white shoes. There were walkers and wheelchair folded in the corner and a lot of hustle and bustle. Again, I was shocked to see so many staff besides the seniors in the building. There was an information desk staffed with two volunteers who welcomed me. I picked up a monthly schedule of events and cruised the area. There is one large room filled with people playing bingo which somehow made sense. Another large room was filled with folks doing some form of crafts which also makes sense. I pass another smaller room filled with seniors sit in front of laptop computers. This was the first promising scene I had encountered. I stayed a few minutes longer then fled like a ninja. I don't know what I expected, I thought I would've found a few more folks closer to my age and not many ancients. I really feel I will be out of place or well be out of place when I return. But I do plan to return and see how place fits me and just see how I can make the place fit my needs.

I know this is a senior community center and I know there are a lot seniors who were here before me but life is change and this isn't your dads Oldsmobile any more...

Slippery Slope

Spring has finally found its way to the Wasatch front. Winter has fought the arrival of spring tooth and nail but longer days of sunlight have prevailed and the days are warming. I'm still getting my bearings regarding life in retirement. I'm enjoying the eight hours a week I spend at 211 answering phones and helping out where I can. The weather has been cold the last two weeks of February and March but now the cold weather is breaking it looks like spring is on its way. I continue to ride UTA on almost a daily basis going to doctors appointments and meetings and work. This is good, I get to keep involved which helps my self-worth. I could really see how some people have problems making the transition to a healthy retirement. So far I've been pretty lucky.

There is something happening to me however which is caused some concern. The spasms I have struggled with since my spinal cord injury seemed to be getting worse. I'm not sure of the etiology and I must find out why the spasms are so persistent and strong. The spasms seemed to peak as I go to bed at night but lately I having a more and more severity with the spasms as I travel out in the community. Yesterday, for example, I was at the local market after I had met with Mark Anthony and Jasmine. But my legs spasms got so severe I was afraid I would be thrown out of my chair right there in front of the market, where I was waiting for DeeDee to pick me up in the van. Usually, I don't think I look as distressed as I seem to be these days. Two or three people actually stopped on their way out of the market to see if there was anything they could do to assist me. I eventually elevated by chair shoved myself back in the seat but something is happening and I'm sure I'll be making another visit to my medical practitioner to see. I'm currently on a regimen of antibiotics to attack persistent bladder infection I have. We thought the medication would have an impact on the spasms but as of yet the spasms persist and I am hypervigilant, watching to make sure I am not thrown out of my chair especially in public. I mean Friday I made it to my meeting with DDS Advisory Board. I was late missing the whole meeting the least getting lunch, but while I was there again, my legs loud in front of me and I began sliding out of my chair. Luckily Paul was not too freaked out and was able to assist me in climbing back into the chair. DEE D EE thinks it may be calcium deficiency or some other vitamin deficiency. Would that be the case I would be so pleased. Will have to keep an eye on my spasms in my chair. I kind of think it has something to do with the cushion and the way the padding in the cushion is pushed to the back and forces my whole body forward on the cushion and I tend to slide out of the chair. There's something about my foot pedals as well and the way my foot tends to slide off, my right foot, the foot platform. So I don't know if this is a trip into rehab or into magic rest are whoever is my provider now. Either way it's just more weird stuff as part of this transition.

Yesterday I was fortunate to spend time with Mark Anthony and Jasmine. Mark made special time to visit with me in trying to assist me in getting a new cell phone. It's time I'm well past the point where I'm eligible for new cell device. Looks like I'm going to go with the Casio commander, which is a special tough cell phone, a smart phone! Not sure how I will deal with this, a smart phone but should be fun and hopefully, reckoned to large a bill. Will watch it closely and see how the transition goes. I really do think I well like the 3G capability. More importantly I think I will like the spring – – temperatures in the 60s by Friday.

 Ross and me from  long ago...

I received a letter this week from my brother Ross, my older brother Ross, who is a bit of a Luddite and I mean that in the best sense of the word. He just has no use for things of the 21st-century. So I was a bit perplexed when I got this letter, Rosset even sent a birthday card earlier this month and knowing are hard it is for me to send a birthday greeting I know it was majorly more difficult for Ross but he didn't I got my birthday card on time with money inside. I opened the letter with some trepidation not knowing what the inside – – I could tell there was hardly anything inside just one paper folded three times. The paper was a computer printout of the screenshot of the screen of an article published by KTVB Channel 7 the BoiseNBC affiliate. The screenshot showed an image of a grizzly old guy named Bruce( last name is not important) what was important was this guy named Bruce had been arrested on suspicion of murdering his wife and what's important to me was/is I know this guy or should I say I knew this guy in a time. At this point in my life – brand-new 62 – I didn't think anything surprises me anymore, is been a long time some something took my breath away. This article did just that.

I can safely say I have not been in communication with Bruce for 40 some years, not since grade school art maybe junior high. Growing up with Bruce we' had been in many of the same grade school classes. Bruce had a set of twins for older brothers. These guys were great they were minor sports stars for the local high school and I know a couple of years they were a little league baseball coaches. They were tough to there for Bruce was tough. Bruce was someone I'd never want to fight and I never had to thank goodness, I'm sure Bruce would cleaned my clock. Bruce was part of my universe growing up, he was not a close article in my nuclear existence that he was there. I lost contact with them after junior high and my accident. With the advent of Facebook, and the Internet, averaged out and try to find him a couple times but to no avail. I'd heard rumors that Bruce had enlisted during the Vietnam War and even served in special forces which did not surprise me at all. But every search I did for Bruce dead-ended. I figured he was gone one way or the other.

So, I was blown away, when I received the mail from my brother Ross. I of course immediately went to the website identified on the screenshot and read what I could. Bruce lived in the old neighborhood not far from the house he was raised in. So, he'd been around, he had a life it seems a quiet life until one day something exploded and he did the unthinkable. Since I got the letter from my brother I have been trying to wrap my brain around what happened in Boise a couple weeks ago. I haven't talked to any of the people I know who knew him yet. I don't know how to do that just seems rude to talk about Bruce behind his back that way yet I need to know what some of these folks think. Eddie, John, Tom, Rosemary and a host of others who knew Bruce. I almost want to write Bruce a letter delivered know I support them – – but do I? I don't know him obviously not this Bruce that the Bruce of the five o'clock news. What would I say to him if I did make contact? It's obvious he killed the person in question, it's obvious he's going up the river if not worse – – Idaho still maintains capital punishment. Do I just turned my back on this person of my childhood and walk away? I feel like a jerk doing something like that. I guess that's what I want to know: for the other folks dealing with this? We have to deal with it he's part of our past – – and maybe in some way part of our future… I just want to know.